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BEHANDLING-God og treffsikker diagnostikk, behandling og rehabilitering

Best Practices for Sámi Governance of Research Data

Tildelt: kr 99 999

Summary: Health is to a large extend determined by the social environment and not by the health care systems, which calls for an interdisciplinary approach and use of various data sources to make good and sustainable public health measures. However, public health measures may only be successful and sustainable if the target populations themselves are governors and partners in the stewardship of the data used for public health policies. To create good public health policies targeted towards the Sámi populations and create healthy communities, the Sámi peoples themselves should be included in the stewardship and governance of data relevant for them. The digitalisation of data, use of big data, and open science have raised new and unforeseen ethical dilemmas concerning the reuse of health and research data related to the Sámi people and calls for attention. Global Indigenous Data Alliance (GIDA) is a global network of Indigenous researchers, data practitioners, and policy activists advocating for Indigenous governance of their data within their nation-states and at an international level [1, 2]. In 2021, the GIDA-Sápmi network was founded, which is a cross-border and interdisciplinary network that promotes the objectives of the international GIDA network in the Sámi contexts. The secretary for this network is at the time at the Centre for Sami Health Research at UiT the Arctic University of Norway. With the invitation to the conference, there will be a call for papers to a Special issue/edited volume. The conference and the Special issue/edited volume may help the GIDA-Sápmi network to identify the most pertinent ethical dilemmas and relevant issues related to Sámi governance of research data.


BEHANDLING-God og treffsikker diagnostikk, behandling og rehabilitering